Welcome to WHL. You sound a lot like me. I had psoriasis symptoms as a teen, but mostly ignored them. I started having balance problems in my mid-thirties, and then was diagnosed with Meniere's Syndrome in 1999. From then until 2007, I gradually noticed more and more skin rashes, including the butterfly rash, and joint pain. I finally got a good dx in 2008 - Mixed Connective Tissue Disease, which means that I have symptoms of several AI diseases - Lupus, Sjogren's, Psoriasis, RA, with Spasmodic Dysphonia and the Meniere's (or autoimmune inner ear disorder) thrown in.
You are lucky that your docs seem to be working as a team and are on top of it. Hopefully, they will soon get you onto the right meds to keep it all under control.
Let us know what you learn next week.
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@marla, i hate to pry but did you have any dizziness with the balance problems? i dont have dizziness just tinnitus in both ears with some hearing loss but with no fluid. any help would be really appreciated
You have to be careful with tinnitus as it causes virtigo bad, where it knocks you off balance and also to the point of passing out.
I'll add some info below on it to help you.
What causes tinnitus?
Tinnitus can arise in any of the following areas: the outer ear, the middle ear, the inner ear, or by abnormalities in the brain. Some tinnitus or head noise is normal. If one goes into a sound proof booth and normal outside noise is diminished, one becomes aware of these normal sounds. We are usually not aware of these normal body sounds, because outside noise masks them. Anything, such as ear wax or a foreign body in the external ear, that blocks these background sounds will cause us to be more aware of our own head sounds. Fluid, infection, or disease of the middle ear bones or ear drum (tympanic membrane) can also cause tinnitus.
One of the most common causes of tinnitus is damage to the microscopic endings of the hearing nerve in the inner ear. Advancing age is generally accompanied by a certain amount of hearing nerve impairment, and consequently chronic tinnitus.
Today, loud noise exposure is a very common cause of tinnitus, and it often damages hearing as well. Unfortunately, many people are unconcerned about the harmful effects of excessively loud noise, firearms, and high intensity music.
Some medications (for example, aspirin) and other diseases of the inner ear (Meniere's syndrome) can cause tinnitus. Tinnitus can in very rare situations be a symptom of such serious problems as a brain aneurysm or a brain tumor (acoustic tumor).
Originally Posted by sann321
No, I never did have vertigo or dizziness very badly. However, I could be walking down the hall at school, and suddenly hear noises in my ear that sounded like I was in the middle of a hearing test - whistles and beeps, etc. - and it would mess up my balance. If I wasn't near a wall to grab onto, I would fall in a heap. Scared a few students and colleagues!
The lack of fluid drove the ENT crazy, but she called it Meniere's anyway. Later, my rheumy said that it was more likely Autoimmune Inner Ear disease, and blamed the dry ears on my Sjogren's.
Here's some good info on AIED - http://www.vestibular.org/vestibular...toimmunity.php
Autoimmune Inner Ear Disease (AIED)
When a virus attacks, the immune system defends the body. When the immune system malfunctions, its defense capabilities sometimes mistake the body's own cells for invading viruses or germs and attack them, which is referred to as autoimmunity. The immune system can attack the whole body or just certain systems, including the ear. Even if the ear is not being directly attacked, debris created by an autoimmune reaction in one part of the body can be transported to the ear by circulation and cause harm. When the ear is itself attacked, this is known as autoimmune inner ear disease (AIED). The progression of damage and functional loss caused by AIED can be rapid.
In general, autoimmune disorders occur more frequently in women than men and less frequently in children and the elderly. In addition to AIED, autoimmune disorders that can affect the ear include Cogan's syndrome, relapsing polychondritis, polyarteritis nodosa, Wegener's granulomatosis, systemic lupus erythematosus, ulcerative colitis, Sjogren's syndrome, and rheumatoid arthritis.
The most prominent symptom of AIED is bilateral asymmetric progressive or fluctuating sensorineural hearing loss, meaning hearing loss in both ears of different severity that occurs unpredictably or worsens over time. The hearing loss typically occurs over several months but can progress over several years and is often accompanied by tinnitus. The presence of vertigo and other symptoms typically related to vestibular loss depends on the degree of the loss and whether the damage has triggered a problem with fluctuating function (for example, if endolymphatic hydrops developed from the autoimmune reaction). The symptoms of autoimmune problems can be similar, even indistinguishable, from other vestibular disorders; Meniere's disease is sometimes present.
I hope this helps. My problem isn't too bad anymore, but I have lost some hearing, especially on the left side. I still occasionally hear loud ringing in one ear or the other, and I just have to sit down for a bit until it passes.
Last edited by magistramarla; 06-12-2011 at 07:24 PM.
i because of the lack of fluid or other build ups in my ears and the nerve damage in both ears i mention the autoimmune inner ear disease. he sort of laughed it off be cause that general effects one ear and not the other? huh? i have nerve damage in both ears but more sevarely in my right but i guess not enough for him to even think that could be a cause. i will also mention again i wont even be 32 until october. Thanks for the wonderful information. I really think it is amazing that we can draw on all the experiences of each other rather than have to continually make our own path. Thanks soooooo much!!
It makes me upset when docs are so rigid. They have the rules that they probably learned in med school, and if we as patients don't fit in their little box of rules, then we just can't have that! I think of it like this - we are all individuals, and every individual body deals with these AI diseases differently. It seems that if they would really listen to us and observe carefully, they just might learn something new about our diseases.
I definitely have problems with both ears. The last time that my hearing was checked, I had lost 60% in my left ear and 30% in my right ear. I feel that I know when my hearing "ratchets down". That happens when I get a lot of tinnitus in one ear or the other, and then I notice that my hearing is worse in that ear.
Try to see an otologist or an otolarygologist. Those have been the best for me.
How are you feeling?...and i hope your day is more pain free. xxx
Suzannes test Results for those that are interested
ok i got my results from my punch biopsy and labs. my ana was negative. my doctor was really surprised. (which inspired my to start the survey thread on ANAs, please visit!) any way most everything was normal- abnormals were as follows-- all and any insight is appreciated and sought after!!!!
Labs / Result / Normal Range
RBC / 5.13 / 3.80-5.10
Hemoglobin / 15.1 / 11.5-15.0
HEmatocrit / 44.4 / 34.-44.
vit d 25- hydroxy / 30 / 32-100
CCP antibodies IgG/IgA / 54 / 0-19
sed rate / 2 / 5-39
I know most of these are almost normal. I just feel like with all these lesions on my body i should find something. I also realize that the CCP antibodies is pretty high and that is usually a sign for RA.
My punch biopsy basicly said its not psriosis and its not cancer or a inflammed hair follicle and considering i have these all over my body im pretty happy about those results.
I have yet to get the CT with contrast because.... even with insurance its gonna be expensive.
My balance still stinks, my ears still ring and pulse, i still have lesions. Now i just have some medical bills for test that show me nothing to add to the mix. Anyway. thanks for letting me vent. and any ideas of the labs are welcome.
Last edited by sann321; 06-17-2011 at 04:22 PM.
Lab results can show false with anything linked to Lupus as it plays with the bloods so much.
I'm adding two links below so you can search on Medicinet to match results and the other Link explains results and having to Lesions something is causing it. xxx
www.medicinenet.com › ... › sedimentation rate article
Last edited by Peridot20_Gem; 06-18-2011 at 06:43 AM.
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